My twins girls came at 26 weeks and 5 days. When my smallest daughter’s water broke, I ended up developing chorioamnionitis, and they had to take them. Adriana was born 2lbs. 1oz. and was the healthier baby the first week of life and suddenly on day 8 she became the sicker of the two. We were told that she might have a bowel infection and she went from a CPAP machine to the ventilator. We had no idea how bad it was until we received a phone call that she needed surgery. The surgeon wasn’t sure how much bowel was dead and all we could do was pray that it wasn’t all dead. Four hours later we found out that she only lost less than a fifth of her bowel including her ileocecal valve, but the rest of her small intestine looked sick. Part of her bowel was also perforated. She had a stoma. Her surgery caused her PDA to open and two days later she had to have PDA surgery. The day after that they had to go back in and clean up her stomach. This time her small intestine looked pink and we felt relieved. She had so much swelling that they had to put her on the oscillator. She held my finger after all three of her surgeries the took place in four days. She looked at me as I told her how much I loved her and how important it was for her to fight. They couldn’t close her wound the second time due to all the swelling and they had to keep pumping her full of platelets, plasma and paxils. Every day my husband and I watched as she slowly got better and her swelling slowly went down. Since her wound didn’t close on her own, they had to help close the wound with a wound vac. She had several stomas and a mucus fistula. They had the worst time keeping the stoma bag on, and it was getting changed anywhere from 3-6 times a day. It was extremely difficult to watch her cry through every stoma bag but I always made sure to put my hand on her head and hold her hand while the nurse would change each stoma bag. That always seemed to calm her down. They started feeding her on continuous feeds, but she only made it to 5ml per hour before she started dumping. After seven weeks she was reconnected and did very well with surgery. We were so hopeful that we were finally in the right direction. She almost made it to full feeds before she got sick and they had to stop feeds again. Her belly swelled up and they had to put a suction tube down her nose to suck out the air and contents in her belly. They kept a close eye on her to make sure she didn’t get NEC back again. After a week off they thought she might have a stricture or an obstruction and she got an upper GI. It came back showing that everything went right through which was good news. They started her again but this time ever three hours with a bottle. She did great with the bottle, but it was too much for her and she started throwing up. When they started fortifying my breast milk she started having blood in her stool and would cry as if she were in pain. Everyone suspected she might have a lactose intolerance. This time around she made it five days before she got really sick again. They had to back off on her feeds and switched her to pregestimil. That week she lost 7oz. At this point she was finally a full term baby, weighing under 5 lbs. and her sister was 2 lbs. bigger. They had to yet again go off of feeds for a week and give her belly a break. This time she had a barium enema which showed a slight narrowing in one of the places she was reconnected. They started her back on continuous feeds but this time with pregestimil. After several days of pregestimil she was dumping so they decided to add pectin to help slow down the dumping because she started losing weight again. The pectin seems to be helping. They also decided to give her breast milk for 24 hours to see how her body would react. It was not good. Her stool became like a faucet and we now know that she can’t handle milk at all. They are now giving her only pregestimil and have slowly been getting her to full feeds. She has been in the NICU for 113 days and is 43 weeks gestation. Right now she only weighs 5 lbs. 1oz. Her growth chart is horrible. Every time she takes 3 steps forward, she takes 4 steps back. Adriana is such a fighter and it’s amazing to me her resilience. I hope that we can soon get her gaining weight without being on TPN and lipids. She has been on and off TPN for so long that it’s starting to elevate her liver levels and she is jaundice due to it. Her pic line has been in her little hand since her first day of life. I’m looking forward to the day that she will no longer have a pic line and will be able to take from a bottle again. I can’t wait for her and her sister to get healthy enough to come home but I know that they are in a good place. I do my best to visit the NICU frequently with a positive attitude and I participate in everything that I can with their care. I’ve learned that the more that I’m there holding and interacting with my children, the better and stronger they become. I know that Adriana will most likely always have some difficulty with her digestive track. I’m prepared to do whatever it takes to help her to grow and tolerate feeds.

5 responses to “Adriana’s Survival Story”

Awe..she is so sweet. My son’s story is Benjamin’s story. I understand what you are going through. Such a difficult time. But she is a fighter and is strong and you will get through this. She is beautiful!!! My son had liver damage, but since he’s been home and off TPN he has no lasting affects….I hope that things will turn around and you’ll be able to take her home soon. My son took off once out of the hospital, I think being at home and with mom & dad is the best medicine.

I am soo sorry to hear what you are going through but I can completely relate. My twin girls were born at 33 weeks and twin B contracted NEC on the 6 day of life. It is true what Shannon said once they are at home they will be growing like weeds…Adriana will be in our daily prayers. Please keep us posted…All of this will be a small episode in the long & healthy life your girls will have. Sending love & healing white light to you all…

I just wanted to update on Adriana’s situation. Since I posted this she had to have another surgery in September to clean up scar tissue that was preventing her from being able to tolerate her feeds. I also had her formula switched to Elecare which was the best thing that could have happened for her. She finally got up to full feeds and started gaining weight. She stopped dumping and after 140 days of having a pic line in her, they took it out. They tried to give her a bottle but her swallow is so week that she is aspirating into her lungs. She is currently on NG feeds and we will most likely have to have a G tube inserted. After 149 days she and her sister were both able to come home on the same day but they both have NG feeds. She’s not handling a higher volume very well so I am currently feeding her every two hours and she seems to handle that better. My husband and I are blessed to finally have them home and I’m willing to do whatever it takes to keep her growing and tolerating feeds. She is now up to 6lbs. 11oz.

Molly thank-you for the update. Sweet baby girl Adriana has done so well and its wonderful news that she and her sister got to go home the same day. Keep us updated on the girls and I’m sure there is nothing like holding them close! Best wishes, Elaine

I just wanted to give an update on Adriana since she will be turning ! year old on May 22. She is up to 12lbs. 4oz. and is 26in. She loves eating her solids and after spending most of her life not being able to drink from a bottle due to silent aspirations, she was just recently given the OK to drink thickened liquids. Since she is not able to take all of nutritional needs by mouth, she did just get G tube surgery two weeks ago to replace the NG tube. She is much happier with the change. Sometimes she still gets episodes where she stools excessively but trying to just make small changes when giving her formula increase seems to help. She’s rolling all over the place and I am working with the therapists right now to help strengthen her core so we can start working with her to sit on her own and crawl. She is getting her knees under her when she rolls which is really great. Her sister is already crawling and pulling herself to standing position. All of Adriana’s abdominal surgeries has set her back some in her physical development. She and her sister are very happy babies and are laughing and smiling all the time. We feel so blessed!